REM Behavior Disorder

[Monday37]

I am a tv reporter looking to do a story with someone in the LA/Southern California/San Diego Area that suffers from this debilitating syndrome. Waking up, kicking, uncontrollable urges of violence, not the same person during the day as at night. We will be doing this with a doctor or if you have a doctor who has helped you we will talk to him and hopefully give others hope and solutions....That is our goal...If you are interested, please contact me, Lisa at [moderator note: phone number has been removed]....thanks....

[callmesusan]

My husband would be interested in this. We live in Temecula.

[gebj]

I realize you are looking for someone in the Southern California area. However, my sister has a very bad case of REM sleep behaviour disorder and is looking for someone to tell her story too, and possibly find out how she can get some help. Please help me find someone in my area who would be able to tell me how to get some help. Sincerely George Bruner. Outside of St.louis Mo.

[gebj]

I read that you were wanting someone with REM Behavior Sleep Disorder to tell their story. You were wanting someone from California, unfortunately I live near St. Louis, Missouri. I would love to tell my story and to connect with others with my same disorder. It is a maddening disorder and just knowing and talking with others with the same disorder will help. Four years ago this week, I awoke in the middle of the night with my leg bleeding. I made an appointment with my neurologist with Washington University, St. Louis and once I saw him he told me I needed to go to the sleep clinic at the same facility. They scheduled me for a sleep study and then the horrible diagnosis was given to me that I suffered severly with REM Behaviour Sleep Disorder. I have been living a hell with this disorder. My daughter saw that on an upcoming Oprah show they wanted people with sleepwalking disorder tonotify them.She notified them and they sent me out a release and had me hire a company that could videotape me sleeping. I did so and even though my activity wasn't as great during the videotaping,The Opray show said they didn't know enough about this particular disorder to televise it. To me, this is more terrifying that sleepwalking is. I have so much as even left my house and walked down a huge hill that leads to a highway in front of my house. I have bloodied my body, including blacking both eyes,etc. This has been so depressing. I am on 2 mg. clonazepam, 4 tabs of ropinirole for RLS. I am so exhausted when I get awakened by the alarm at 7:30 a.m. If I sit down and sit still for a few minutes, I literally fall asleep. Everything I do during the day is done while tryinf to stay awake. I have had pneumonia twice since March of this year and have had to be hospitalized. No one really in this area seems to want to try anything for the sleep disorder, they say "just take clonezapam and that's it". This can't be it. I have no life and feel so depressed all of the time. I can't think clearly. Please help me.

[gebj]

This is a continuation of the post I put up earlier. I forgot to tell you something quite important. My oxygen level drops alot as I sleep. I was placed on a CPAP machine, but remove it every night around 2-3 hours into my sleep. I have tried everything but having something over my nose and mouth freaks me out in my sleep and I take it off. I think if I could keep my oxygen level up in the 90's I wouldn't feel so bad either. Thank you for the add on. My name is Debbie Johnson and I am the 52 yr. old who lives near St. Louis, MO. Thanks so much for listening.

[gebj]

I see your husband has REM. I too suffer from this horrific disorder. Unless you experience how it leaves your body feeling upon awakening, you could never understand it. I would love to talk to him via this site if he would be interested. I think it always helps to find some support when you are going through a rough time. It kills me when people think you are just talking about sleep walking, talking, etc. This disorder is hard on your body and mind. It is much deeper than sleepwalking or talking. How was he diagnosed and how long ago? My e-mail address is jets@charter.net if he would care to communicate with me.